Monday, May 1, 2006

[Photo: Mike's afternoon entertainment]

Couple of Notes:
            • Mike's radiation appears to be occuring a bit earlier this week (like 11:30 am instead of noon). He should be back in his room by 1 pm to eat lunch each day.
            • Also, please feel free to look at the calendar to think about dinner dates with Mike for next week (May 8-12).
              • Password: welovemike
            • Nurse appreciation week is May 6-12, too. We could shower them with love and cookies.

Today Mike was more alert than yesterday. My mom and I arrived around 1:15 (at the same time as Cheryl) and I helped him eat lunch. He had a good appetite, ate all his lunch, 2 of Kristen’s cookies, and a bunch of Hershey’s kisses (from Getz and/or Mary).

In terms of medical details, here’s the latest. I talked to Dr. Andrews tonight. He’s planning on aspirating the cyst with a needle tomorrow. My understanding is that it’s a straight forward procedure where they just drain the big mushroom top bubble that’s pressing into the fornix. He imagines that this should bring Mike relief and possibly help his short-term memory and intense fatigue stemming from pressure on the hypothalamus. He actually said it should make mike “much better.” I’m reserving judgment. I’m tired of being disappointed and don’t need to crash again.

While surgery is scheduled for tomorrow, it’s contingent upon his having a normal temp. Mike has been spiking a fever for weeks. They stopped his antibiotics over the weekend so that they can have a clear picture of what’s going on in his blood in terms of infection. Antibiotics in the bloodstream can mask infections. None of the cultures they’ve drawn and let grow over the past week have revealed any infection, but they drew more blood today to see what they find without antibiotics clouding the picture. With that in mind, Andrews says the plan is still to operate tomorrow – unless Mike’s fever spikes over 101, in which case the operation would be postponed. If surgery does happen, Andrews would like to continue right along with radiation, possibly only missing one day to reimage Mike’s radiation mask. The geography of the tumor will have changed post-cyst-drainage, hence altering the target of the radiation. Reimaging is necessary to minimize harm to other vital structures.

Dr. Andrews told me flat out that the current plan is to keep Mike at JHN for the remaining 5 weeks of radiation therapy. I told him that I supported that plan – particularly since I can’t even think of where else Mike could be right now. I did tell Andrews that if JHN is going to be home to Michael for the next 5 weeks that it’s imperative that nurses and techs understand the importance of getting Michael up and about each day – if even just for meals in the chair. It’s not common for folks to be in that particular ward for weeks on end – so nurses might not think it a big deal if during their own 12 hour shift, Mike remained in bed. But over time, this would be really really bad for Mike. In addition to sitting in the chair, we should try to prop him up with a pillow behind is shoulder and back to make him lean on his side a bit. The last thing Mike needs is skin breakdown on his backside from being flat in the freaking bed for so long. I encourage you all to keep these things in mind and speak as mike’s advocates when I’m not there.


This morning, I got a ton of financial stuff done. I talked to Verizon and they agreed to let me change from the 700 min/month to the 1400 min/month plan retroactively. This is only $20 more/month and took a whopping $460 off of my insane $597.88 bill for last month.

I also got a call from the woman who owns Bax’s daycare. They have been wonderful to us at Haddon Learning Center and in addition to the love, care, and stability they give Baxter, it also turns out that one of the other kids’ moms is in the top level of hospital administration at Jefferson. Elizabeth (who owns HLC) talked to her a bit about our Vince situation and today the mother met me for coffee around noon at Jefferson and talked with me for an hour. She was wonderful and showed so much sympathy for our situation. Boy, would I hate to be Vince right now. As I told Elizabeth, so many of us have so much anger and frustration with Mike’s situation in general, that this bum nurse walked into a minefield.

I gave Mike a shave today, got him comfortable and put in an episode of Once and Again on DVD. When we were dating, we were such dorks about this very girlie show. We watched it every week. He’s in love with Sela Ward. Have you seen her perfectly arched eyebrows? I can’t say I blame him. It was nice to watch this dumb show with him, though I don’t know how much of it he could see or understand. He seemed to be enjoying himself, though.

I haven’t really picked myself completely up since last night’s crash. I’m starting to miss Mike a lot and there’s not as much work/logistics/preparation to preoccupy my mind from the dreadful reality that we’re in. Francine, you’re totally right about feeling better just by planning things out. I have mapped out every road and I know what we’ll do in the event that Mike is permanently hospitalized/at home with a nurse/ passes away. I’ve worked out all the details for my own peace of mind. Thanks to everyone for validating my pissed-off-edness. I can sense that you’re all right here with me. Thanks for being my safety net. I couldn’t do this without knowing that you’re behind me.


csm said...

popped in to see mike today at 4:30... he was sleeping, so i sat and watched him for a spell. his nurse, monique came in at about 5pm and he woke up... first thing he said when he opened his eyes and saw me sitting at the foot of the bed, "Hi Sooz." :-)

I chatted with him for a spell while Monique got nurse stuff done. We talked about how she could be French (and I asked him to do a french accent-- which he did... and German, too.) I told him about my exciting news of the day (I saw a car fire on 4th street outside of Kevin & Beth's old building). He seemed interested. I read David Sedaris to him, which he smiled and laughed at in places... and then Kevin arrived and the fun was sucked out of the room (just kidding). I left the two of them to dine with Italian accents.

no huge insights into anything other than he seemed to be aware and responsive... he didn't talk much-- but then again, i can be quite boring at times... i did enjoy reading to him-- and i think he liked that.

kisses, susan

Anonymous said...

There's bubble wrap for Mike to play with in that strange box. There are also cards our friends and family made for Mike at our Seders. Emily made the box. She calls it a "Happy Box" to make Mike happy. I thought it might also work as storage in the room for tactile toys, notes,hershey's kisses,etc.


Anonymous said...

just a note to other bloggers -- thanks for summarizing your visits with mike! it's nice for us outoftowners who don't get to see him...especially the humor. danna, keep on keepin on. we are here. --tresa

Anonymous said...

This url is to a site where you can light a candle for someone special.

There is one lit for Mike, with love.

Carmine said...

Hi Danna,

We've probably met on occasion, but I can't say for sure (my wife and I are friends of Cheryl's from college). We just learned of your ordeal (and this blog) yesterday and feel moved by your strength, love, and ability to find humor in a not so humorous situation. We feel compelled to offer to help in some way, but we don't know how. Coming to visit probably doesn't make sense since Mike wouldn't know us from Adam. We don't really live that close to you (about an hour west of Philly) so offering to babysit or mow a lawn or do housework probably doesn't work either. We can offer you our support and prayers, which you certainly have, but we feel the need to do more. Is there anything we can do for you as "friends once removed"? Please feel free to email me (munga1@comcast.net) if there is anything we can do.

- Carmine

The Brain said...

Thanks so much, Carmine! I'll certainly let you know if there's anything I can think of. truly, just your presence on the blog and your good thoughts and wishes brings me more strength than you'll ever know.

Anonymous said...


Is there a chain store, like Dunkin Donuts or Starbucks, around the hospital so we could send a gift certificate for Mike's nursing staff to have a treat?

If you don't know the answer to this question off the top of your head -- please don't go out of your way to find out; we'll figure out some other way to thank them.

Jenny Lambe

Peter said...

There's a Starbucks at 10th & Chestnut, in the Victory Building.

The Brain said...

Jenny - great idea! a G.C. to starbucks or WaWa (which is right downstairs) would be perfect!

Heide said...

Have you seen her perfectly arched eyebrows?

Thanks for the belly laugh of my day.